ALS Iron Horse Foundation

What is ALS

ALS stands for Amyotrophic Lateral Sclerosis. ALS was first described in scientific literature in 1869 by the French neurologist Jean-Martin Charcot. In the United States, ALS is commonly known as Lou Gehrig's disease after the famous New York Yankee's first baseman, Lou Gehrig that died of ALS in 1941. In England, it is known as MND or Motor Neuron disease. The French refer to it as Maladie de Charcot.

A - Without
Myo - muscle
Tropic - nourishment
Lateral - side (of the spinal cord)
Sclerosis - hardening or scarring

ALS is a neuromuscular disease that affects a person's ability to move certain muscles, which eventually affects movement, swallowing, speaking and breathing. ALS does not affect the mind; mental acuity remains sharp (except in a very small number of cases, where dementia has been documented, but this is rare). The senses also stay intact. Unlike a spinal cord injury, an individual with ALS can feel everything and has not lost the ability to feel normal sensations.

At the present time, there is no cure or effective treatment for ALS. There are rare cases where the disease progression plateaus or stops. There are a few cases of people reporting a reversal of symptoms. If an ALS patient opts for a ventilator, he or she can live for many years with the disease. Although there is no cure, there is a lot of promising research and improvements in medical care that can prevent complications and enhance one's quality of life.

How common is ALS?
• Incidence of ALS is about 2 per 100,000
• Prevalence of ALS is about 11 per 100,000
• In the US, approximately 30,000 people have ALS
• 5,600 new cases per year
• Approximately 15 new case per day
• ALS strikes more men than women
• Typical age of diagnosis between 40 and 70
• 10% of ALS cases are “familial” or hereditary
• 90% are “sporadic”, having no genetic or hereditary link
• 50% live up to 18 months of diagnosis
• 80% live up to 5 years of diagnosis
• 10% live more than 10 years

"ALS, is a disease that strikes each person in a different way. My first symptoms began with weakness in my arms and muscle spasms across my chest. Like me, some may experience weakness in their arms. Others may experience leg weakness making it difficult to walk. Slurred speech, shortness of breath and difficulty in swallowing are other symptoms. Eventually all muscle groups are affected, except for the mind and the senses." - Jeff Bannon

Fifty-six hundred people are diagnosed each year. That's fifteen people per day. While there is not a cure, research and improved medical care can prevent complications and enhance quality of life.